Patient story

Debra Whelan

My story is a new one. In November, I began to experience dizziness while driving, which I attributed to an inner ear infection. In January, I began to experience numbness in my face which I attributed to an inner ear infection, but my dance instructor convinced me to call my cardiologist since I had a heart valve replaced 8 years ago. Now I am in the midst of the entire battery of tests. My echocardiogram showed a rise in pulmonary arterial pressure (PAP) from 19 in 2006 to 40 with mild diastolic insufficiency and a decreased ejection fraction (EF) from 65 to 55.

Before mid-January I was dancing ballroom and swing 15 to 20 hours a week. Now, I am only able to dance about 3 to 4 hours a week, and I’m unable to dance more than a couple of minutes at a time. I have given up ballroom, weight training and pilates. Currently, I only dance the slow West Coast, which is called the walking dance. The stress from the idea of not being able to dance is nearly unbearable.


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.